An ASD-friendly hol­i­day

Help­ing kids with autism make the most of Christ­mas

The Central Voice - - Front Page - BY KRYSTA CAR­ROLL

Ava Folkes sits with her dad, Jamie Folkes, pa­tiently wait­ing as he views a video and folds pa­per origami for his daugh­ter.

The home is dec­o­rated for Christ­mas. The stock­ings are hung. Christ­mas pic­tures are on shelves and the tree stands in the win­dow.

There’s a per­son un­known to her sit­ting on the couch ask­ing her mom ques­tions.

This, her mother Natasha Folkes said, is much dif­fer­ent than last Christ­mas, and even more dif­fer­ent than six years ago.

“Ava was born on 12/12/12 and is a Christ­mas mir­a­cle,” Natasha said of her lit­tle girl born at 26-weeks’ ges­ta­tion and at one pound. “We were all ready for Christ­mas and all of a sud­den we ended up in St. John’s.”

Ava’s first pic­ture with Santa took place at the Janeway Chil­dren’s Health and Re­ha­bil­i­ta­tion Cen­tre on Christ­mas Eve when she was 12-days old. She was the size of Santa’s hand.

She spent 100 nights at the Janeway in St. John’s, and when they took her home at four-months-old she was only seven lbs.

As a mi­cro-pre­emie, she had nu­mer­ous doc­tor appointments.

“She wasn’t mak­ing any mile­stones, which we knew was go­ing to hap­pen be­cause she was so early,” Natasha said. “They did the ad­justed cor­rected age so we said lets work on that.”

But as time went on, she wasn’t meet­ing her cor­rected age mile­stones. She wasn’t re­spond­ing, mak­ing eye con­tact, and so on, her mother ex­plained.

“At two years old I re­ally started to get con­cerned,” Natasha said.

After test­ing, Ava was di­ag­nosed with autism in Au­gust, just be­fore she turned three.

Christ­mas sea­son

When it comes to Christ­mas, or any new sit­u­a­tions, the fam­ily takes it in stride. Work­ing around what makes Ava com­fort­able.

Things have cer­tainly changed for them in the past few months and they be­lieve the hol­i­days will be dif­fer­ent as well.

“Last year Christ­mas was prob­a­bly the hard­est year on her,” her mother said. “My child ac­tu­ally gave me an epiphany.

“She was com­pletely melt­ing down last year after we had our tree dec­o­rated. We couldn’t fig­ure out why and she was clas­si­fied non-com­mu­nica­tive at the time, so she re­ally couldn’t fig­ure out how to com­mu­ni­cate what was wrong.”

After many days she fi­nally was able to say “trees be­long out­side.”

“We are so used to hav­ing a tree in­side for Christ­mas since the be­gin­ning of time, our minds aren’t wired like hers,” Natasha said. “She im­me­di­ately thought that was a silly things to bring a tree in­side. It just wasn’t ‘right’ to her.

“That stays with me all the time and makes me dis­sect ev­ery sit­u­a­tion that is dif­fer­ent for her to see what we may have done that was wrong on her eyes. We some­times think so in­side the box we never see the ob­vi­ous… tree doesn’t be­long in a liv­ing room.”

A year ago, the visit from The Cen­tral Voice to the fam­ily’s home wouldn’t have gone the same as it did last month ei­ther.

“She didn’t want any­one in her world,” her mother said.

Last Christ­mas, she brought fam­ily mem­bers to the gate at the top of the stairs in their home and told them all to go.

“She (Ava) was so over­whelmed,” Natasha said. “She screamed and cried. That was Christ­mas Eve last year. She did not want any­one com­ing here, so I thought next year we’ll make sure no­body comes. But she’s good as gold now.”

She even ran away at one point last Christ­mas to get away from peo­ple.

“This year I don’t think will be like that,” Natasha said, adding she thinks this is par­tially due to her com­mu­ni­ca­tion.

In July Ava, her mother, grand­mother and cousin took a trip to Florida.

“She was in bed with me and we heard her say, ‘I think I feel hun­gry to­day,’” Natasha re­called.

Not only was she speak­ing, she was ex­press­ing how she felt, and it was hun­gry, which her mother said was odd be­cause she was on a shake diet be­cause she has food aver­sions

“I started cry­ing say­ing, ‘Mom what do I do?’ She said, ‘Get her some food,’” Natasha said. “From then on that was it.”

Ask Ava her name, birth­day, favourite any­thing and she will tell you.

“She’s a dif­fer­ent child,” her mother said. “The big be­hav­iours and melt­downs she had are gone be­cause now she can ex­press. We all have our pref­er­ences of what we are in the mood for.”

There are still sit­u­a­tions she isn’t com­fort­able around, like fire­works and blink­ing lights, and she won’t let any­one play Christ­mas mu­sic.

“It’s sen­sory over­load for her,” Natasha said, adding they keep things as calm as pos­si­ble. “If we take her to a party and she wants to leave, we leave.

“If we are at a home, ev­ery­body knows we don’t know what Ava we are get­ting. Some­times she’s OK and peo­ple say, ‘I don’t even see the autism to­day,’ other times she can’t han­dle it, she’s too over sen­si­tive.”

The fam­ily doesn’t make many changes when it comes to the hol­i­days. This year the fam­ily tamed down the lights on their tree and Ava wanted to dec­o­rate it, and when it comes to crowds and vis­i­tors she is more com­fort­able.

The fam­ily was look­ing for­ward to the Grand Falls-Wind­sor Christ­mas pa­rade and the sen­sory friendly zone they would be watch­ing from, as well as the sen­sory friendly show­ing of “The Grinch” at The Clas­sic The­atre af­ter­wards, where they were hav­ing Ava’s birth­day party.

Ev­ery Christ­mas Eve they visit friends (a tra­di­tion that started when Natasha was a young teen) and the chil­dren do a gift ex­change and they do a lit­tle bit of vis­it­ing, what­ever she can han­dle.

“I tell peo­ple if you don’t see me over Christ­mas, sorry,” Natasha said. “We are on her time. We go with the flow with her. We go with what she wants.”

Ava said she’s ex­cited for Christ­mas. She has her let­ter writ­ten for Santa, and she asked for an “Ap­ple card” as well as a “red and green piggy bank” and slime.

“She’s very happy,” her mother said. “She’s quite loved. She’s an an­gel.”

KRYSTA CAR­ROLL — SPE­CIAL TO THE CEN­TRAL VOICE

The Folkes fam­ily of Grand Falls-Wind­sor, from left, dad Jamie, Ava and mom Natasha, take the busy­ness of the Christ­mas sea­son in stride, do­ing what Ava feels com­fort­able do­ing. Ava was di­ag­nosed with autism just be­fore turn­ing three, so the fam­ily — though they say they don’t make many changes when it comes to the hol­i­days — go on Ava’s time and what she wants to do.

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